Sunday, May 19, 2013

Nephrologist (kidney doctor) appointment

I had an appointment with a nephrologist last week to ask about my kidney-area pain. Since the beginning of my illness, this pain has been like a barometer for my overall health. When the kidney pain flares up, a crash is not far behind. The pain always seems to go hand-in-hand with flare ups in other symptoms, like shortness of breath and sore throat, even when those other symptoms effect completely different areas of the body. Somehow, it's all connected, I just can't figure out how.

I had met with a nephrologist once before, about a year ago, and he pronounced my kidneys fine. But he was a very strange doctor with a bizzare personality. I never felt that I could fully trust his diagnosis, and he wasn't able to explain some out-of-range test results.

This time I met with a more down-to-earth nephrologist (Dr. H.) He was able to convince me in very clear terms that the pain I am experiencing is almost certainly not coming from my kidneys [1/7/18 edit: I now think he too was wrong], in spite of what I have believed for two years. He stated that the kidneys have almost no nerve endings, and while it is possible to feel pain in the kidneys, this only happens when people suffer kidney stones or extreme kidney infections. In such cases, however, apparently the pain radiates down to the lower back and groin area. He also said that the kidneys are apparently covered by some sort of "hard shell" that protects them from being bruised or damaged from twisting and turning of the torso. Then we reviewed my recent blood work (and the blood & urine samples from the prior nephrologist) and he agreed that everything looks good.

I appreciated that Dr. H took the time to carefully explain this to me (but not in a pedagogical way), and then to try to help me figure out what else it might be. He was willing to step outside his speciality and discuss my health generally. At this point, I never think that any one doctor will be able to solve my case completely, but sometimes I find one that can put a piece of the puzzle in place.

He says he occasionally sees patients, like me, that have this mysterious flank pain combined with extreme fatigue. He wished he knew what was going on with "us," but he acknowledged that medicine does not always have all the answers yet.

Dr. H said I might think about acupuncture, which he stated has helped others with complaints similar to mine. He also emphasized how important it is for immunocompromised people to keep their hands away from their face...something I really struggle with. Then, after I left the appointment, he actually called my cell phone because he had still been thinking about my issue after I left. How often does that happen? Anyway, he said that based on my chart, he thought testosterone supplementation would help me feel better. That's the third doctor who has told me that.

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Sometimes, it seems I'm destined to repeat the same mistakes over and over again for the rest of my life and that's just the way it's going to be. My wife and 21-month-old daughter were headed to an outdoor music festival this weekend and I couldn't decide whether to go or not. I knew I shouldn't because of the way I had been feeling and the fact that I have ME/CFS!

But ultimately, like so many times before, I found a way to rationalize it. My thoughts usually run something like this: I find a way to convince myself that I actually wouldn't expend much more energy, if any, at the festival than if I stayed at home. "I mean, most of the time I'll just be sitting in a lawn chair listening to music," I thought. "How is that different than if I stayed home? So the only difference is the walk to and from the car. How is that different from the walking I do up and down stairs and around the house?" The devil on my shoulder also forgot to mention that I'm still trying to get over a cold.

I have to say, the festival was quite fun. I'm fortunate I didn't miss out on the memories I now have of my daughter dancing, spinning, and often seemingly drawing more attention than the main act. I also had the pleasure of watching her take her first bite of funnel cake, eyes widening and becoming fixated on the rest of the cake in a true eureka moment.

So I would have to say it was worth the crash. The only problem is that I am always thinking "If I can just get past this [fill in name of event or obligation], I'll have a chance to really rest up and get past this push/crash cycle." But there's always something new popping up. Others seem to be much better at drawing lines. It's a serious challenge for me, but one I'm going to work on.

10 comments:

Hey Patrick, sounds like a good doctor you have even if nothing major was discovered. For him to call you back like that is telling. His suggestion on testorsterone is interesting. Where are you at for your levels in regard to the normal range? I bumped up my weekly injections about 3 months ago to where I am in the 75% normal range. I can tell I have a bit more stamina now based on how I feel when I exercise, and the day after. I can also tell the day before I inject (having gone 6 days since)I am more fatigued and worn out. So I draw the conclusion that it is one of the few supplements that has definitely helped me. And since I am still in the normal range, I don't really worry about adverse effects just yet. So....that may be a suggestion to consider depending on your current levels. In respect to going to the music deal and paying consequences. I have just resigned that I cannot let this take moments from my daughter growing up (she is 10)as once it is gone, it is gone for good. I have paid the price a few times, but at least I know I didn't miss out on something special. Not sure if that is the right thing to do or not, but that is life for me right now.

Bret, sometimes it's almost as if we're living parallel lives. LOL. We have a lot in common. The way you described your attitude toward wanting to make sure you don't miss any family moments is pretty much exactly how I feel too. Not sure if it's the right thing to do or not, but I've committed to that path so I've pretty much accepted that.

Some people will say that if you really just shut everything down, quit work, and basically don't do anything all day, that you have a shot of recovering fully, especially if you're newly ill - like within 5 years. But I just can't see taking that chance. If there was a 100% guarantee that it would work (or even 90% or 80%) I would do it in a heartbeat. But if I did that and it didn't cure me, I will have lost my job and missed out an untold family & friend moments. It's just too much of a risk and I frankly doubt that it would work. If that truly worked, I think we would have heard more about it. Besides, nobody ever says how long you have to wait. 3 months? 3 years? Who knows?

With regard to the T levels, mine tested in 300s. I was recently given injections of T to do at home, but I crashed after being on it for a couple weeks and am still waiting to recover before I resume. While I don't think the crash had anything whatsoever to do with the injections, my natural reaction to a crash is to eliminate anything that I've recently added ...just to be safe. My goal (per 2 different doctors) is to get it up around 800. Just curious, what does your doctor say is the target number?

I am currently at 690 for T levels, and I inject 2.5 mcl weekly. I will have my T levels checked every 4 months to monitor, but he thinks this is a good level for me to be at without risking the side effects that body builders have when they spike their T levels. Always some trial and error involved with every treatment option as you well know. In regard to the complete shut-down on life in the early stages, I too wonder about how effective that is. I still think that one can lead a decent life with ME/CFS and recover eventually by not pushing things to where you take days to recover. Like you, I certainly can't put my life on hold for who knows how long for a chance that I MIGHT recover from this. Especaially with a career in tow.....I find that being able to still work gives me some sense of purpose, and accomplishment which mentally is huge. Does it tire me out on some days? Absolutely. But I know if I stayed at home I would try to find things to do around the house, using energy anyway. Obviously I never expected to have these trials on a daily basis, but that is life for me now. I really hope you are pulling out of this most recent crash Patrick.

My T levels now are at 689, and this is by injecting 2.5 mcl weekly. I was at 250 or so originally which was why it was suggested I start injections. For 8 months I injected 1 mcl weekly, and the number barely moved, hence the increased dosage. My doc is comfortable with where I am at now, and does not want to go above 700. Too many things start changing in the body when you go above that level according to him. I completely agree with you Patrick on the going 100% dormant to cure this thing. If it gave a high percentage change of providing recovery, of course we would all do this. But, as you stated, how long would you need to put life on hold for just the chance of this working? Then try to get back into the working world after that time off, etc. It may present other problems in life that even a healthy person would have a tough time getting out of. So, my perspective is to manage this best I can within my limits, and take supplements that can help me live a functional life. Mentally it is huge for me to be able to work nearly full time (38 hours a week now), exercise a bit, and know that I can have a bit of a social life to stay connected with friends and family. Without that I would in a dark place. Keep me in the loop on your dealings with T levels, and other treatments. So gald this forum exists!

Brett, first, sorry you had to type that explanation twice! You probably thought the first one didn't post, and that may have something to do with the fact that I had to change the comments settings to where I have to click OK before new comments post. I was just getting too much spam on old posts.

That's really good to know what your doctor said about not going above 700 on your T level. Mine got up to about 500 with cream for one test, then mysteriously dropped back down. I think I felt a little better when I was up in the 500s. So now that i'm on injections, he has me doing two injections of 2 mcl per week. So a little bit more than you, but now I'm wondering if that's too much given your doctor's 700 limit. We'll see how it goes on the next test.

I am starting to pull out of this most recent crash - thanks for asking. I think it was a nasty bug that really put up a good fight for a while. I hope you have been doing well lately.

I understand about the extra unexpected walking that sometimes happens. And after being taken by surprise a few times I have now acquired a marvellous little trike - called a TravelScoot. I highly recommend it to all ME sufferers who find that the extra steps they end up taking when out of the house can knock them back. www.travelscoot.com or www.travelscoot.eu I guess I should do a blog post on my Travelscoot soon...

I'm sending some people your way from http://myjourneythrume.wordpress.com/2013/05/27/me-cfs-why-oh-why-do-you-flare-up-so/They were talking about pain and never knowing of anyone else complainingthis symptom... Hope you're doing well ish, Patrick!

Patrick, I quit working after being sick 6.5 months. I really had no choice, I was very ill, but I thought it would make everything better and it didn't. 4 months after that, I became housebound. Now, 8 months later, I am worse than ever energy-wise. I walk about 500 steps a day. Reducing my stress and activity to virtually nothing has done NOTHING. Maybe it'll be worth it years down the road, but there are no guarantees. I feel like each time I slip lower, I stay there.

Sally, thank you so much for the tip! That might be just what I need! (although it looks like your back would get sore...?)

Hi Elizabeth, thanks so much for sharing that experience. It really helps to get other peoples' perspectives. I am so sorry that you are housboundbut I have hope for you. Thanks for sending people my way. Appreciate that.

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DISCLAIMER: I am not a doctor and have no medical training. Nothing in this blog should be construed as medical advice. This blog simply recounts my personal experiences and, at times, summarizes research from other sources. I can't verify the accuracy of these other sources. Never rely on anything you read here in making your own medical decisions. Always consult a doctor.

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What is Myalgic Encephalomyelitis (ME)?

The clinical definition of ME is complicated, and the symptoms are many. It is a "multi-system disorder" that affects a person's immune system, hormones, nervous system, and energy (at the cellular level). I prefer to explain, simply, that it feels like I have the flu. Every single day. This is an oversimplification, but it's often the best way to explain it to a healthy person.

About Me

I came down with ME in June, 2011. I was diagnosed six months later. This blog tracks my progress; my successes and failures along the path to (hopefully) sustained remission.
I live with my wife and two young daughters in Southern California.